Travelling with an ileostomy bag

GreyLady1985

Hi, I was fitted with an ileostomy bag at the end of March and was hoping to go on holiday in September. I was just looking for some advice or tips from anyone that has one and has gone abroad, what was your experience like? Any advice would be really appreciated.

Thanks

Hi GreyLady1985, I have an ileostomy since 2016, colon removed due to worsening ulcerative colitis. I am an avid traveller, there’s nowhere you can’t go or nothing you can’t do with an ileostomy in place. I’m actually away in Thailand atm 😁 DM me for any specific questions you’d like answered.

I originally had the colectomy & ileostomy in September 2016, but stoma became necrotic immediately and retracted so a corrective surgery had to be done in November, had 4 litre pelvic abscess too that had to be drained. But once the initial complications were sorted I recovered rapidly and in February I was off on my first post-op trip, to Antarctica of all places! I had my first post-op sea swim there, in water 2C!

Practicalities: going through security I find the Irish security staff untrained, coming out here the security girl had never heard of a stoma and was stunned to learn if it first time from me. This is in contrast to, eg returning from Gran Canaria, where the security girl did a discreet check to ensure it was a genuine stoma bag and not something stuck in to conceal drugs or explosives etc. A lot of overseas countries have their staff more stoma-aware, but that too means they may want to make a quick check that it is what it is. It doesn’t bother me at all. I have a knee replacement which always sets off the alarm so I very often have to go through a physical check.

Out of practicality I use disabled toilets at airports. Now that I have developed secondary progressive MS I actually look the part for using one too! It’s must easier & more hygienic emptying the bag with a washbasin right beside you.

I always bring a lot more supplies than I need, so travelling with Ryanair etc in short haul I always have to factor the hefty luggage charges. When people remark on my large luggage (Have you your husband hidden in there? Asked the taxi man) I blurt straight out what is taking up the extra room, people get educated that way. But often the response then is “my goodness you are great to be travelling with that!”

I bring plenty of those Diamonds charcoal gelling sachets as they are handy after drinking a lot of water, particularly in hot places where you find you need to, and of course half that liquid ends up in the bag in no time, especially if you haven’t eaten. Timing of changing of the bag can be tricky, usually morning or after a long fast and when not too much liquid has been consumed.

I also bring loads of flange extenders. In 2018 I developed a strangulation of a parastomal hernia, which is an uncommon complication, and had emergency surgery. There had been bowel leakage so I had to be washed out, but still developed a post-op infection which responded well to treatment, and I was sea swimming in Galway in no time. The result of that surgery was an irregular shape around the stoma which makes it prone to leaking if I don’t manage it very carefully. The leak-prone side gets lots of flange extenders which “buy time” if I notice the beginning of one.

My first blockage experience was on account of taking sweetcorn soup on the return leg of the Antarctic cruise. First tell-take was green liquid only output, where I sprung a leak in bed in Buenos Aires, I removed sheet and folded it up, no bother, staff replaced it, they’re used to little accidents. I took to bringing my own waterproof sheet, adding even more weight to luggage, but don’t bother doing that any more. That sweetcorn blockage became painful and nauseating during the return plane journey home, but once it was all out I recovered quickly and learned my lesson never to eat it again. Mushrooms would do the same, but hate them anyway. I had an experience with olives too. They all have the same thing in common, they get wedged in that bottleneck that is a necessary part of the stoma creation.

Btw, did my first ever parachute jump, in Gran Canaria, St Stephen’s Day, and I’m 62. Can’t do that again, nothing to do with stoma, but my progressing M which is my main bugbear now.

GreyLady1985

Thanks you so much for your reply! I'm only seeing it now. I am 37 and didn't even know that a stoma was possible until I had to have emergency surgery in March of this year and I woke up with one. It has been major learning curve for me.

Fair play to you for all you have dealt with and all the travel you do. We have two small children and they want to go on holiday but I am terrified to be honest. Like you, I have suffered with leaks and to be honest I'm not the best flier anyway.

I totally agree with you when it comes to mushrooms, YUCK!

I'm so sorry to heat of your current condition. You are putting me to shame, both with your positive attitude and how you are coping with everything.